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  1. #1
    ABW Ambassador lola's Avatar
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    Since I had my very beautiful, lovely princess of a daughter 4 years ago, I knew something was wrong. We had a few ideas what was up, but were unable to get a diagnosis until very recently. We just got an "unofficial" diagnosis, and an appointment for more testing (but I know mother instinct that we are right on track). Her day care specializes in special needs and she has seen a child psychologist.. her IQ is unreadable(high) yet her fine motor skills are so lagged she is at a 2 year level. If anyone loses anything we ask her, because if she saw it (unless it was her that hid it!) her photograghic memory can help everytime!

    So, if anyone comes across any online resources or chat forums on Asperger's, please let me know... I have a longer journey ahead of me now!

    It's not alot to remember that "A LOT" is too words!

  2. #2
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    I really don't have anything to offer, but just wanted to give you a big {{{{{HUG}}}}}

    I'm not an Asperger Syndrom expert by any means, but I've done a little reading on the subject, and I know that several successful people are now believed to have suffered from that.

    Once a diagosis is made, your little girl can get the treatment she needs to blossom a have a happy life.

  3. #3
    ABW Ambassador flamingoworld's Avatar
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    My 9 year old son was diagnosed with Asperger Syndrome last spring. He also has Sensory Integration Disorder.

    Be glad you found out early before school, we had quite a few struggles until we got the diagnosis.

    Some Good Books to read:
    http://www.amazon.com/exec/obidos/tg.../-/1853025771/

    http://www.amazon.com/exec/obidos/tg.../-/1572305312/

    http://www.amazon.com/exec/obidos/tg.../-/0609608118/

    A website with lots of links and info:
    http://www.aspergersyndrome.org/

  4. #4
    ABW Ambassador lola's Avatar
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    Thanks netsu for the hug and Connie for the links!!

    <BLOCKQUOTE class="ip-ubbcode-quote"><font size="-1">quote:</font><HR> Be glad you found out early before school, we had quite a few struggles until we got the diagnosis. <HR></BLOCKQUOTE> - She won't be starting this year, even though she will be old enough, socially she is not going to be ready, and she is so tiny a pound less than my cat.

    What is Sensory Integration Disorder?

    It's not alot to remember that "A LOT" is too words!

  5. #5
    ABW Ambassador flamingoworld's Avatar
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    Many times Sensory Integration Disorder goes along with Aspergers.

    My son has problems being in large groups where there is a lot of noise, gets distracted easily, has to have clothes that are soft, no tags, socks are a problem because of seams, he hates shoes...Food can be a problem because of textures. The classroom can be unbearable because of all the activity going on. He doesn't like to be touched, but loves his back rubbed. He is easily distracted, almost like Attention Defict Disorder,.
    There are lots of things that go along with it and every child with it is different.

    Here is some information on it:
    http://www.geocities.com/~kasmom/sid.html

    My son takes a medication that helps with his Sensory Integration problems and it makes it bearable for him to go to school.

  6. #6
    ABW Ambassador lola's Avatar
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    Connie, you just described my daughter almost word for word. I am shocked. Food is a big big problem with us too, because of texture, and smell. It seems she "senses" everything too strongly, covers her eyes at bright light and ears at high sounds. and she loves having her back rubbed so much that her eyes roll up! She has a big fascination with socks! She will only wear them if they are bought from the Gap. I tried buying some walmart socks are told her I got them from the Gap, but she knew...she remembers every pair the Gap has, and every color, even the positions on the shelves.

    Does your son have any speach problems? My daughter stammers and slurrs her speach a lot, I often have to translate for her.

    It's not alot to remember that "A LOT" is too words!

  7. #7
    ABW Ambassador flamingoworld's Avatar
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    My son has been in speech therapy since preschool. He did very well because he got early intervention.
    He also has writing problems. He may end up being exempt from cursive handwriting in school. He can print very well but it takes him forever to do it neat.

    My son also has obsessions. He will have a subject and talk about it all the time whether you want to hear it or not. For a while it was dinosaurs, then a video game, now WWE wrestling.

    He doesn't necessarily play with toys, but will organize them, line them up..

    He is very very smart on subjects he is interested in. He has a very high IQ, he just learns differently. He is reading way above grade level.

    These kids are extremely smart, they just need different techniques to learn.
    Most go on to be very successful.

  8. #8
    ABW Ambassador Radegast's Avatar
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    Lola

    I'm not an expert but the Tomatis Method can help Asperger Syndrome.

    It is possible that your daughter's ear is not filtering sounds correctly and she is simply overwhelmed with auditory data.

    If that is the cause, the ear can be trained to overcome this problem.

    Tomatis

    Best wishes to you and your daughter.

  9. #9
    ABW Ambassador phillyburbs's Avatar
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    Lola:

    Being married to a psychologist, I've heard Asperger's discussed often enough. I think Connie and Radegast have provided some good feedback for you. Blessings to you and your family.

    Karl Smith >>> phillyBurbs - Your Internet Starts Here
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  10. #10
    ABW Ambassador lola's Avatar
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    We have our first appointment with hearing and speach in ten days. When your son was a baby did he suddenly stop talking, or forget everything he learned? Mine did at about 11 months...she just stopped talking and stared at lights...then months later started talking again...

    It's not alot to remember that "A LOT" is too words!

  11. #11
    ABW Ambassador flamingoworld's Avatar
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    My son has never stopped talking, and I mean that literally! He just talks and talks and talks...When he was little he would get stuck on a phrase or word and say it over and over though. Unfortunately his favorite word for awhile was "fart"....

    My son wouldn't sleep. You had to wait til he finally fell asleep and then carefully move him in to his crib. He quit eating a few times, that was scarey..
    Until he was around 3 we were still mixing formula in with his milk. He was never on those growth charts.
    He would bang his head on the floor a lot when he was a toddler.

    We have looked into the Tomatis method but there is still some controversy on the subject.
    Our doctor has not suggested we try it at this time.

    The thing that has made the most difference with the sensory integration issues has been medication. He hasn't had a meltdown like he used to have since and the medication didn't do anything to change his personality or have any negative effects on him.

    My son did see an occupational therapist once a week and we got lots of tips on things to do at home. We have a brush and brush his arms and legs, doing that old wheelborrow thing, where you hold their legs and they walk with their hands is part of it, and also a mini trampoline is good. There are lots of things they give you to do that desensitizes them.

  12. #12
    ABW Ambassador Radegast's Avatar
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    Connie

    Doctors have an impossible task keeping abreast of developments in conventional medicine, they are usually not clued up or sympathetic towards alternative treatment methods.

    There will always be controversy, but the Tomatis method is not at all dangerous - it can't do any harm, and has helped many many people.

    The ear plays a major role in co-ordination and balance - the auditory nerve connects through the brain stem to every muscle in the body.

    The eye focusses on whatever you look at, and objects in the foreground and background go out of focus.

    The ear, when it is functioning normally, does the same - background noises are filtered out.

    You can be in a room full of people making noise, and if someone whispers your name you hear it - that is an example of aural 'filtering'. The ear picks up and hones in on what is important and suppresses everything else.

    For some unfortunate children, this filtering does not function correctly, and it can cause a whole range of behavioural problems.

    Anyway - you have been living with this problem for a long time - I don't mean to presume.

    Just wanted to post the information as many people won't be advised of these things by their doctors.

  13. #13
    ABW Ambassador flamingoworld's Avatar
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    The issue why this was not recommended was that it needed to continue indefinately, if you stopped doing it anything gained would be lost.

    The doctor we are using is very on top of things, she goes to lots of conferences on Asperger's and has recommended lots of things to us. She talks with us about all the options and gives us her opinions on each and lets us make the choices.

    There are lots of experimental things out there, you can't jump on them all. I prefer to do the tried and true things first before I jump into experimental things. And so far the conventional things are working for us.

    The main problem we have is trying to get the schools to do the things they need to do.
    My son has an IEP, and it is a struggle to keep the school following it. They try to cut corners or don't follow it because they are lazy.

  14. #14
    ABW Ambassador Radegast's Avatar
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    That's interesting. I was under the impression that once the ear has been corrected it functions OK from then on, and you don't need to continue the treatment indefinitely.

    I will check.

  15. #15
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    I have a friend at w*rk who has a son who was diagnosed with it last year. Just a little guy but smart as a whip according to his mom. She says he talks all the time too. I'll have to ask her how they're doing. I think I remember her talking about treatments and tests etc.

    "Very funny Scotty. Now beam down my clothes."

  16. #16
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    Wasn't there something about stomach enzymes and dietary management in relation to Aspergers and Autism? I thought I saw in on a current affairs program not too long ago. Kind of like how some parents found a link between the kinds of foods their children eat and the fact that they had ADD as a result. Probably old fare now for Connie and Lola (I'm sure you would've researched it to death) - my little girl has a peanut allergy and I know when she was diagnosed, I spent days and nights researching the whole topic...

    Oscar

  17. #17
    Mama in Charge Anne's Avatar
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    Lola,
    Big red flag. One of the criteria for aspergers is NOT language delay. In fact it is counterindicated in aspergers. My son, who has this, was speaking in complex sentences at age 18 months. One of the key factors in aspergers is command of language. Most kids are way AHEAD.

    My daughter was misdiagnosed with autism when she was three. She met ALL of the criteria at age three, but so do *most* language delayed children. So now she has outgrown all of the behavior problems ( she is SPICY and hot tempered, but no autistic like behaviors), she still carries the diagnosis and meets only ONE criteria, late onset of language. It is now apparent she has a language delay instead. The school won't move on the diagnosis though. Once autistic, always autistic. ( A label is not always a good thing )

    She also struggled with sensory issues but they have faded as her language has come in.


    Please do not accept the first diagnosis you get. Be sure you have your child evaluated by a LANGUAGE specialist before you go to a psychologist. Psychologists and drs are VERY quick to slap a spectrum diagnosis on kids these days. If you can let me know where you live, I will see if I can find one in your area. We are having to spend a great deal of money to take my daughter to language experts to overturn her diagnosis.

    As far as the enzymes and diet... some children with autism spectrum disorders respond to WF GF diets, vitamin therapy, and / or enzymes.. but it is a very very few. Also, some respond very well to milk removal from their diets.

    I just have to comment on this
    "Once a diagosis is made, your little girl can get the treatment she needs to blossom a have a happy life."

    My daughter was misdiagnosed and it has been a nightmare. Again, just be sure to seek out language experts BEFORE autism doctors. The RIGHT diagnosis is important! Connie's son has been correctly diagnosed but that is not always the case. :0(

    ~*~*~*~*~*~*~*~*~*~*
    It pays to be clever
    ~*~*~*~*~*~*~*~*~*~*

    [This message was edited by Anne on March 05, 2004 at 11:56 PM.]

  18. #18
    Mama in Charge Anne's Avatar
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    I pulled the diagnositic criteria for you to look over in case you don't have it. Go through each item and assess how much that applies to your child. Pay attention to words like "marked" and "Qualitative" if your child does this a little , it is not enough.

    A. Qualitative impairment in social interaction, as manifested by at least two of the following:
    marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
    failure to develop peer relationships appropriate to developmental level
    a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. by a lack of showing, bringing, or pointing out objects of interest to other people)
    lack of social or emotional reciprocity
    B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
    encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
    apparently inflexible adherence to specific, nonfunctional routines or rituals
    stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
    persistent preoccupation with parts of objects
    C. The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning
    D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)

    E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than social interaction), and curiosity about the environment in childhood

    F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia

    ~*~*~*~*~*~*~*~*~*~*
    It pays to be clever
    ~*~*~*~*~*~*~*~*~*~*

  19. #19
    ABW Ambassador lola's Avatar
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    Anne: I agree on the language delay, but thats one of the reasons why she has been hard to diagnose. She is also extremely affectionate at times...but it seems like she feels she has to be. The psychologist we saw wanted to send her to someone else to officially diagnose because of a few reasons, the language delay being one.

    It's not alot to remember that "A LOT" is too words!

  20. #20
    Mama in Charge Anne's Avatar
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    Lola,
    My daughter's language was severely delayed. Here is a GREAT group for you to join on yahoo groups.

    latetalkkids

    and another

    naturallatetalkers

    PLEASE go join them. You can get lots of info from other parents. Haille has an appointment with Dr Cammerata in Nashville in April, then Dr Agin in New York in June. Two of the country's top language experts ( that can distinguish between autism and language disorder/delay) The problem with language disorder is many kids that have this LOSE their autistic like characteristics, and often , sensory issues, as they develop language.. and they become more connected when they can communicate fully. There are many experts advocating for a diagnosis of autism to NOT be made until a child is at least six because SO many children are misdiagnosed. Anyway, learn all you can, and remember that even if you do get a diagnosis, keep your eyes open because it CAN change. I know many kids originally diagnosed as autistic who simply grew out of it :0)

    ~*~*~*~*~*~*~*~*~*~*
    It pays to be clever
    ~*~*~*~*~*~*~*~*~*~*

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